May is Lyme Disease Awareness Month Blog Post #14: Neurodegenerative Diseases

If you were diagnosed with a neurodegenerative disease such as Multiple Sclerosis, Amyotrophic Lateral Sclerosis (ALS), Alzheimers or Parkinson’s you should watch these videos.  You should also watch these videos if you were diagnosed with Fibromyalgia.

Dr. Alfred Miller, practiced Internal Medicine and Rheumatologist for 40 years and is a Mayo Clinic trained physician.  In 2008, he started looking into ALS when his daughter-in-law was diagnosed with it.  He heard about the ALS being misdiagnosed with Lyme Disease so he began researching more.

Video 1:  Intro

Video Part 1:  Considering an alternative cause for Neurodegenerative Diseases

Video Part 2: Proper Testing of Lyme and Chronic Lyme Disease

Video Part 3: Illnesses that are Manifestation of Lyme Disease

Video Part 4: Neurodegenerative Diagnoses in Athletes

Dr. Miller stresses the urgency of getting PROPERLY tested.  He states this because if you get properly tested and diagnosed with Lyme Disease you can then get treatment and have a chance of recovering from these conditions.

mimic disesaes

 

You can watch the videos above but he is basically saying that all of these illnesses

can present exactly like Lyme Disease and that the patients MUST be PROPERLY tested for Lyme.   The only way to be PROPERLY tested for Lyme is to see a Lyme Literate MD.

Why does it matter what diagnosis you have?  Well, it matters if you want to possibly heal and get rid of your symptoms.

 

 

 

 

 

 

 

 

 

 

May is Lyme Disease Awareness Month Blog Post #13: Personal Stories

So I thought sharing some personal stories of fellow Lymies may help people believe that this disease is real and debilitating.

My story – After 19 years of chronic daily migraines I finally found out why I was getting them.  It took 19 years, a lot of pain, a lot of depression, a lot of prescriptions, a lot of doctor visits, 2 hospitals stays, numerous ER visits and a surgical implant to finally get a diagnosis.  I never knew anything about Lyme disease and I never could have imagined that this was the cause of my migraines and various other health problems.  I encourage anyone with chronic migraines to see a Lyme Literate MD.  

If you have one health problem like, anxiety, depression, an occasional migraine or arthritis in one knee then you probably don’t have Lyme.  But it you have many conditions or have had many illnesses in your lifetime you, Lyme Disease may be the cause of them. 

Lyme Patient:  A day in the life video

WJAC-TV News

Lyme is Hell

The Irish Times

Resiliently Rachel

Read Between the Lyme

Lady of Lyme

John Caudwell

The Mighty by Alyssa Whitlock

May is Lyme Disease Awareness Month Blog Post #11: The Politics, Denial and Lies about Lyme Disease, Part II.

A lot of people are coming forward to expose the lies our government is saying regarding Lyme Disease.  As a Lymie you try to ignore the lies and how the poorly the doctors treat you because you really just want to feel better and have you life back.

Here are a variety of links so you can read about the politics, denial and lies about Lyme Disease and decide for yourself.

Lyme Crime Video

Under Our Skin

The CDC’s Greatest Coverup

Plum Island

Truth Cure 

Lyme Wars

Plum Island Experiments

CDC says few people suffer from Lyme Disease

You may think that everyone including myself are conspiracy theorist but think about this:

  • The people on the CDC committee that decide the Lyme Disease testing and guidelines have conflicts of interest.  Most people on the committee have ties to big pharmaceutical and insurance companies.  Why don’t they change the committee if there no cover-up.  
  • The people at IDSA have conflicts of interest too.
  • Why does the government prosecute Lyme Literate MD’s even though their patients get better.
  • Why does the government ignore studies that proof Chronic Lyme Disease Exists?
  • If there is science to prove the infection(s) is still in your body then why doesn’t the CDC and IDSA change their information.
  • Why is there so much controversy?
  • Why won’t the CDC talk about it?  
  • Why are so many people (possibly millions) having the same symptoms and doctors just say they don’t know why?

If doctors take an oath to do no harm then why are they harming so many patients by giving up on them? Why are they not helping people?  Why do they think so many people need a psychiatrist?  Why aren’t these people held accountable?


People are dying from Lyme Disease every day and the government refuses to help.  

Here is the mission of the CDC: “CDC works 24/7 to protect America from health, safety and security threats, both foreign and in the U.S. Whether diseases start at home or abroad, are chronic or acute, curable or preventable, human error or deliberate attack, CDC fights disease and supports communities and citizens to do the same.”

They are not meeting their mission.  They do not protect America.  


 

 

 

May is Lyme Disease Awareness Month Blog Post #8: What are Spirochetes?

When you become disabled with a chronic illness that you know nothing about you end up spending hours and hours reading everything you can about it.  It’s overwhelming  when it’s Lyme Disease because there is SO much information online but every time I read stuff I feel I know less and less about this disease.  There are so many terms to learn too.  Like Spirochetes?  WTH?  I really should have gotten a medical degree instead of accounting.  

What are Spirochetes?

Spirochetes are spiral-shaped bacteria which look like this.

spirochetes

These spiral-shaped cork screw bacteria are the cause of Lyme Disease, Borrelia Burgdorferi.  And there are many strains of this bacteria.  The International Lyme and Associated Disease Society states “There are 5 subspecies of Borrelia Burgdorferi, over 100 strains in the USA, and 300 strains worldwide.” 

Because of the nature of the bacteria (cork screw) it can go through your blood and tissues so it can cause damage in all parts of your body.  This is why Lyme Disease is a multi-system disease and why is is so hard to detect.  The Spirochetes are really clever and can take different forms and hide in your body undetected.  And these Borrelia Spirochetes can lay dormant in your body for years or even decades before they come out and cause damage.  This is the important reason why you should see a Lyme Literate MD if you get bit by a tick.  Because you may think nothing of it now and you won’t even think anything is wrong even if you get  flu-like symptoms after getting bit.  Because you will think it’s the flu and not the tick bite because you did not get a bulls-eye rash.  

Pro Health Article


Previous Posts in this Series

May is Lyme Disease Awareness Month Blog Post # 7  Testing for Lyme Disease

May is Lyme Disease Awareness Month Blog Post # 6 What are Symptoms of Lyme Disease?

May is Lyme Disease Awareness Month Blog Post # 5   What are Symptoms of Lyme Disease?

May is Lyme Disease Awareness Month Blog Post #4   The Great Imitator

May is Lyme Disease Awareness Month Blog Post #3 What is Lyme Disease?

May is Lyme Disease Awareness Month Blog Post#2: Prevention is the only cure!

May is Lyme Disease Awareness Month Blog Post#1 Lyme Disease Awareness Month Begins

 

May is Lyme Disease Awareness Month Blog Post #7: Testing for Lyme Disease

Why is it so hard for doctors to determine if a patient has Lyme Disease?  

In a previous post I mentioned that most doctors are not educated in Lyme Disease and that is why it goes undiagnosed and misdiagnosed for many patients for years.  

  • Since it mimics over 300 other diseases and doctors are not educated in it they assume it’s something else.
  • Since the the list of symptoms are endless it gets misdiagnosed as something else.
  • Most doctors think it does not exist in California so they don’t even consider it a possibility here.  They are lead to believe it only exists on the East Coast in the USA.  And if you get your doctor to test for it they don’t understand the testing so most everyone gets false negatives.  So even if your test comes back negative IT DOES NOT MEAN YOU DO NOT HAVE LYME DISEASE. 
  • The tests are not 100%.
  • The CDC’s two-tier testing method is flawed.
  • Most people have never heard much about Lyme Disease.
  • Most people have never heard of Lyme Literate MD’s

So what are the tests to determine if you have Lyme Disease?

If you get a test done at your regular MD they are only testing for one strain of Borrelia Burgdorferi.  And they are testing for the antibodies of that bacteria.  So basically they are testing your blood to see if your immune system responded to an infection and is trying to fight it off.  

I got tested on September 15, 2015 for the antibody of Borelli Burgdoferi (ELISA test) from my primary care physician and it came back negative so of course I was told I did not have Lyme Disease.  But that was not true.  The doctors don’t know about Lyme Disease so they do one blood test and rule it out.  But to rule out Lyme Disease you need a clinical diagnosis and possibly Western Blot testing of Borrrelia and co-infections.  You can’t just test for ONE bacteria when most people can get more than one bacteria from a tick bite.  And your body can not fight off multiple infections at the same time.  So if you only test for one you are not getting accurate results.

So here is the basics on what testing is available?

ELISA  – Enzyme-Linked Immunosorbant Serum Assay

ELISA

Most doctors who are not educated in Lyme Disease will do the ELISA blood test.   And  if it’s negative they don’t do any other testing.  

Results from ElISA are as follows:

< = .90 is Negative

0.91 to 1.09 is Unequivocal 

>= 1.10 is Positive

My test result was < .90 so it’s assumed negative.  If it came back higher than 0.90 then a Western Blot test would have been done.  But it wasn’t and it was a year later when I went to a Lyme Literate MD that I had it done.  NOTE: 50% of the ELISA tests produce false negatives!

The Western Blot:

The Western Blot is testing different classes of antibodies IgM and IgG.  My understanding is that this test is more sensitive and may show positive results when the ELISA show up negative.  The IgM and IgG are Immunoglobulin type M and G. 

So if a patient has a lot of symptoms and possibly symptoms for a long time then the Western Blot should be done.  In fact, most people say you don’t even need blood tests since a clinical diagnosis for Lyme Disease can be made.  

However, I wanted proof that all my pain and other symptoms were caused by something.  Since I was told so many times I was making them up I wanted proof from a lab saying I was not making these up.  But getting a Lyme Diagnosis didn’t help since most most doctors still thought I was making these symptoms up.  Unfortunately, most insurances don’t cover the costs of these tests and they are very expensive.

The Western Blot still confuses me.  You get a report of the IgM and IgG antibodies and different bands that are either 

 –   Negative 

IND  – Indeterminate 

 +   Positive

Western Blot MEMeThe problem with the CDC is that they are conservative and say you must have 5 bands positive of Borellia Burgdorferi to have Lyme Disease.  Again, if you just stop at the ELISA then you really don’t know if you do or do not have Lyme Disease.  I can’t stress this enough.  You must see a Lyme Literate MD to rule out Lyme Disease.  Your primary care physicians and neurologists and other specialists at “TOP” medical facilities do not know how determine if someone has Lyme Disease.  These places will only do the ELISA test and stop there if it is negative.   

I did gets some positive bands and IND results for the IgM test for Borrelia Burgdorferi.  And I also tested positive for the co-infection Babesia.  So testing positive for Babesia, a co-infection basically means I have Lyme Disease.  


Both of these tests are flawed.  And depending on the lab used the protocols may be different.  And the CDC two-tiered testing is flawed.  So here are some links that can explain it much better than me.


What is PCR (Polymerase Chain Reaction) Tests and will there every be an accurate test?  Check out owndoc.com/PDF


My advice:  Go with your gut!  If you feel you didn’t get properly tested or the right diagnosis then go to a Lyme Literate MD.


Previous Post in this Series

May is Lyme Disease Awareness Month Blog Post #6 What are the Symptoms of Lyme Disease?

May is Lyme Disease Awareness Month Blog Post # 5   What are Symptoms of Lyme Disease?

May is Lyme Disease Awareness Month Blog Post #4   The Great Imitator

May is Lyme Disease Awareness Month Blog Post #3 What is Lyme Disease?

May is Lyme Disease Awareness Month Blog Post#2: Prevention is the only cure!

May is Lyme Disease Awareness Month Blog Post#1 Lyme Disease Awareness Month Begins

 

May is Lyme Disease Awareness Month Blog Post #6 What are Symptoms of Lyme Disease, PART II?

As I previously mentioned there are MANY symptoms of Lyme Disease and all of the co-infections have list of specific symptoms too.  A Lyme Literate MD (LLMD) can determine you have a specific co-infection just by your symptoms and they have to because the testing isn’t 100% accurate.

What are the co-infections?

  • Babesiosis (Babesia)
  • Bartonella
  • Ehrichlia
  • Mycoplasma and Anaplasama
  • Colorado Tick Fever and Rocky Mountain Spotted Fever
  • Powassan Virus
  • Q Fever
  • and more here at lymedisease.org

Here is a chart to compare symptoms of Lyme and the co-infections.

Babesiosis (Babesia) is the only co-infection that I test positive for but I’ve been told I probably have Bartonella and Ehrichlia too.

Here is a great website that lists the symptoms of Lyme Disease and co-infections.

Lyme-Symptoms.com

Babesia


May is Lyme Disease Awareness Month Blog Post # 5   What are Symptoms of Lyme Disease?

May is Lyme Disease Awareness Month Blog Post #4   The Great Imitator

May is Lyme Disease Awareness Month Blog Post #3 What is Lyme Disease?

May is Lyme Disease Awareness Month Blog Post#2: Prevention is the only cure!

May is Lyme Disease Awareness Month Blog Post#1 Lyme Disease Awareness Month Begins

May is Lyme Disease Awareness Month Blog Post #5 What are Symptoms of Lyme Disease, PART I?

Lyme Disease can effect all parts of your body so it can have a wide range of symptoms.  It can get into your brain, joints, heart, lungs, muscles and nervous system.

Symtpoms MEme

First symptoms of Lyme Disease:

  • Bulls eye rash called erythema migrans which most people don’t get.
  • Flu-like symptoms which disappear and then the infection becomes dormant

Some early symptoms may also include fatigue, fevers, joint pain and sleep problems.  But everyone with Lyme is different.

Chronic Lyme or Late Stage Lyme Disease is when the infection is no longer dormant and has invaded the body everywhere and then finally more symptoms appear.  This is where the list of symptoms become endless.  They say Lyme will become full blown when a person goes through a major traumatic event in their life.  That’s what happened to me.  I believe I got Lyme when I was young because I have many illnesses my entire life.  And, I believe the Lyme really appeared when my mom got diagnosed with cancer and 6 months later died because that is when my migraines,  depression and constant nausea started.  

My Symptoms of Lyme Disease:

  • Migraines – Daily
  • Migratory joint pain.  It means you have pain in your joints that jumps around to different joints.  Sometimes it feels like someone is ripping your joint open and then the next day it’s a different joint.  
  • Burning Pain – Feels like your body is on fire.  It’s all over.  Arms, palms, hands, fingers, legs, calfs and bottom of feet.
  • Nausea and vomiting
  • Tremors  – really bad neurological problem that causes your body to shake.  It is especially bad when the burning pain is bad.
  • Muscle aches
  • Electricity shooting pain.  This is horrific!  I feel like someone has plugged my body in an outlet.  
  • Insomnia.  Trouble falling asleep and constantly waking up in the night. 
  • Crippling Pain in hands, fingers and legs.  It feels like my hands and legs have stopped functioning and I can’t hold something or walk at times.
  • Severe anxiety
  • Depression
  • Eye Twitching
  • Mood swings and irritability.  Seems worse with more pain.
  • Severe fatigue
  • Low grade fever
  • Memory loss and forgetfulness
  • Brain fog
  • Stomach pain and cramps
  • Breathlessness called “Air Hunger” which feels like you can’t get oxygen in.  Very scary.  You become completely out of breath just going from your bed to the bathroom.  Having your own pulse oximeter helps you relax and make sure you are getting enough O2.
  • Hearing problems
  • Panic attacks
  • Itching – mostly head, ears, eyes and face but sometimes all over body itching.
  • Heart murmur 
  • Light and sound sensitivity
  • Lightheadedness
  • Neck pain, stiffness and cracking
  • Poor concentration
  • Sparklers shooting at my hands, arms and legs.  Feels like someone is holding a sparkler near me and the sparks are sharp when they hit me.
  • Weigh gain
  • Thyroid problems
  • Overall body weakness
  • Chronic dry lips
  • Digestive issues or upset stomach
  • Chronic chest cough
  • Anger
  • Constant nasal issues and allergies
  • Sweating.  This could be day or night sweats.
  • Rage
  • Menstrual and PMS problems
  • Sleep paralysis and nightmares
  • Teeth grinding
  • Sensitivity to heat
  • Ear pain
  • Facial Paralysis.  Luckily I’ve only had this once.
  • Tingling.  Sometimes I get random tingling in different parts of my body.

So those are just my symptoms but the list goes on and on of the different type of symptoms a person with chronic Lyme Disease can have. 

Here is a Lyme Symptom Checklist that Dr. Joseph Burrascano created to help see if someone has Lyme Disease.

Here is aan MSIDS Questionnaire by Dr. Richard Horowitz to evaluate if you have Lyme Disease.

The Lyme Research Alliance also has a good symptom checklist

Remember even if you don’t test positive for Lyme Disease you still may have it.  A clinical diagnosis can be made by a Lyme Literate MD.


Previous Posts in this Series

May is Lyme Disease Awareness Month Blog Post #4   The Great Imitator

May is Lyme Disease Awareness Month Blog Post #3 What is Lyme Disease?

May is Lyme Disease Awareness Month Blog Post#2: Prevention is the only cure!

May is Lyme Disease Awareness Month Blog Post#1 Lyme Disease Awareness Month Begins